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Tuesday, May 3, 2016

Organ donation was 'beautiful' experience

Thursday, January 27, 2011

CLOVERDALE -- On May 1, 2001 Julie Goss of Cloverdale gave her older sister Melanie Wilkinson a tremendous gift -- a kidney that made it possible for Wilkinson to have 15 months free of the dialysis that had held her prisoner for years.

"We did great things in that time," Goss said, a peaceful smile coming over her face. "Fifteen months is better than no months. I was just really so thankful to see her not, as she would have said, 'chained to the machine.'"

At 19, Wilkinson was diagnosed with glomerular nephritis, a renal disease (usually of both kidneys) characterized by inflammation of the glomeruli, or small blood vessels in the kidneys. The disease often results in acute or chronic renal failure.

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When it was determined that Wilkinson would need a kidney transplant, all three of her sisters volunteered to be tested.

"We all said, 'We'll do it ... if we have two of something and you need one, it's yours.'"

Goss, however, turned out to be the only suitable donor.

Goss was 41 at the time of the transplant; Wilkinson was 49. After several months of testing, the operation happened.

"People always say how horrible a kidney donation is for the donor, and once upon a time that was true," Goss said. "But now it's done laparoscopically."

Laparoscopic, or keyhole, surgery is minimally invasive. It is a technique in which operations in the abdomen are performed through small incisions as compared to the larger incisions needed in laparotomy.

Keyhole surgery uses images displayed on TV monitors for magnification of the surgical elements.

"I have five little incisions," Goss said. "I was off work about 10 days. I was in the hospital for two. Melanie was in the hospital much longer ... maybe a week. Really, it was just nothing."

Wilkinson had "multiple health issues" for most of her life, Goss said. Those issues led to Wilkinson's body rejecting her sister's donated kidney.

"We were a six-antigen match," Goss said. "You have to be a two-antigen match to donate. A six is as good as it gets. Had (Wilkinson) not had all the other things going wrong, she should have realized 30 years out of my kidney."

One of Wilkinson's health battles was with antiphospholipid syndrome -- a condition that can cause clotting within the arteries or veins and various other problems.

Antiphospholipid syndrome may cause clots to form in the legs, a condition known as deep vein thrombosis (DVT). Antiphospholipid syndrome may also cause blood clots to form in organs, such as the kidneys or lungs.

The condition also causes the body's immune system to mistakenly produce antibodies -- specialized proteins that normally attack viruses and bacteria -- to certain proteins in the blood.

"Her body was basically attacking itself," Goss said.

Wilkinson had also had multiple fusion surgeries on her back.

"My mama said she was always sickly, even as a child," Goss said.

After the transplant, Goss and Wilkinson began doing work and projects through the National Kidney Foundation. The sisters spoke in front of the both the House and Senate of the Indiana General Assembly, helping get legislation passed so that organ donors in the Hoosier State could be compensated for the time they had to take off from their jobs.

"That was really something," Goss said. "Here we were in a big room with a bunch of lawyers and legislators in three-piece suits, and the speaker of the house calls 'Julie Goss from Cloverdale.' You could have heard a pin drop. I don't think anyone knew where Cloverdale was."

While in the state's capitol, Goss and Wilkinson went to shopping malls and other high-traffic areas to pass out brochures and pamphlets that contained information about organ donation.

The National Kidney Foundation is a New York, N.Y.-based organization that was founded in 1950.

According to information at the NKF website (kidney.org), more than 2,000 names are added each month to the national waiting list for organ donation.

"About 18 people die every day while waiting for an organ transplant in the U.S.," the site says. "Organ and tissue donation helps others by giving them a second chance at life."

Kidneys can be donated by living or deceased donors.

Living donors are most often close family members -- parents, children or siblings. However, spouses, friends and co-workers can also be tested and can, in some instances, be donors.

"Non-directed donors -- those who donate anonymously and do not know their recipients -- are also becoming more common," the NKF website says.

More information on living organ donation can be found at livingdonors.org.

Those who wish to be deceased donors should be sure to declare their intentions on their driver's licenses. Additionally, donor cards can be obtained at the NKF website.

"Signing a donor card, registry or driver's license is a good first step in designating your wishes about donation, but letting your family or other loved one's know about your decision is vitally important," the website says. "That's because family members are often asked to give consent for a loved one's donation, so it's important that they know your wishes."

Goss and Wilkinson also did work locally, speaking about organ donation at Putnam County elementary schools. They participated in the National Kidney Foundation Walk-Run when Wilkinson was able.

Wilkinson died on Dec. 9, 2008.

Goss said she always felt close to her sister, despite the gap in their ages.

"Our parents got divorced when I was very young," Goss said. "She stayed with our father, and the rest of us stayed with my mom. I remember how excited I would get when she would come over to visit ... she would play with us little girls. We were like her live baby dolls."

After her body rejected her sister's donated kidney, Wilkinson's health began a slow decline. She was moved into Asbury Towers, a retirement community and nursing facility in Greencastle.

"She was in and out of the hospital all the time," Goss said. "She had high fevers and unexplained illnesses constantly. Then one night I got a call at midnight to say she'd just coded."

Goss and her sisters rushed to the hospital, where Goss was horrified to find her sister had been intubated.

"I was her power of attorney, and I knew she did not want that," Goss said. "I had them take the tube out."

Wilkinson held on for another eight or nine hours.

"My mom and dad, my sisters and people from her church came to the hospital," Goss said. "We just sat around her and sang. She was absolutely coherent, and it was beautiful."

Goss was holding her sister's hand when Wilkinson took her final breath.

"I saw her spirit leave her body," Goss said with a smile. "I know she saw the Lord. She opened her eyes one last time as she was going, and it was beautiful."

Wilkinson requested that after her death, her body be donated to science.

"I just thought that was such an awesome thing for her to do," Goss said.

Goss herself has made sure her husband knows she wants to be an organ donor upon her passing.

"I definitely want to donate, especially kidneys and tissue," she said. "This body of mine isn't going to last forever, and it's just such a wonderful thing to do."

Looking back, Goss said giving her sister a kidney is one of the best decisions she ever made.

"It gave me the opportunity to give her a chance at life and I could be just as healthy as I was before," she said. "She felt good, even though it didn't last too long. She and I could go do things; she had vibrancy and she felt so alive again. I was blessed to have been a part of it ... I wish I could have given her another kidney."


Comments
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Thanks for sharing your story. I also have Antiphospholipids and Lupus. I know most people never even heard of Antiphospholipids, not even my family Doctor.

I lost a baby due to this disorder. I too have always been ill since childhood. Which can be very hard for healthy people to understand. I have had an enlarged heart, and kidney issues that started at age 25.

I think it's great you brought awareness to your sisters story! And I'm sure your story will help other people out there in many ways!

-- Posted by beautycr on Thu, Jan 27, 2011, at 9:27 AM

Great story. God has blessed you both :)

-- Posted by mlooper on Thu, Jan 27, 2011, at 10:35 AM

Wonderful story! such a blessing!

-- Posted by karma54 on Thu, Jan 27, 2011, at 11:23 AM

The generosity of live organ donors is wonderful. It's a shame we need so many live organ donors. There are now over 110,000 people on the National Transplant Waiting List. Americans bury or cremate 20,000 transplantable organs every year.

There is another good way to put a big dent in the organ shortage -- if you don't agree to donate your organs when you die, then you go to the back of the waiting list if you ever need an organ to live.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. About 50% of the organs transplanted in the United States go to people who haven't agreed to donate their own organs when they die.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition. LifeSharers has over 14,400 members, including 526 members in Indiana.

David J. Undis

Executive Director

LifeSharers

www.lifesharers.org

-- Posted by LIFESHARERS on Thu, Jan 27, 2011, at 11:44 AM

I have always been touched by this story. Melanie was one of a kind and I am glad she touched my life. In my eyes, there could have been no better bond than the gift that Julie gave to Melanie. God bless you.

-- Posted by B4this on Thu, Jan 27, 2011, at 12:45 PM


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